Tuesday, May 28, 2013

Cloth Diapering a Toddler

There seems to be a lot of talk about cloth diapers lately among the CF mamas I know so I thought I would do a follow up on cloth diapering now that I have a toddler. Be forewarned this is a diaper post so of course bodily fluids are mentioned...

When I first started cloth Kaylee was exclusively breastfed so cloth was extremely easy. If she had a dirty diaper I would take it off and throw it in a wet bag (although later I realized I much prefer pail liners) and be done with it until I did diaper laundry.

Around 6 months my little nursling was introduced to solid food. I absolutely loved giving Kaylee solids and it was always exciting seeing her experience different textures (we did baby led weaning) and tastes for the first time. However, I hated solids when it came to diaper time. I will spare you the details, but once babies are introduced to solids their diapers need to be cleaned off before being put in the laundry. The problem is their poop is not completely solid yet. Yeah, it as gross as you are imagining. There were a few days that I questioned my cloth diapering ways and I even debated buying flushable liners to make this process a little less gross.

Then one day I removed another poopy diaper and to my delight (yes, I used the word delight while talking about poopy diapers) my daughter's transitional poop had turned into (little) big kid poop. This is like winning the cloth diaper lottery because rather than trying to clean sludge off a diaper you simply let the contents fall off the diaper into the toilet and flush. So simple!! We are officially consistently getting (little) big kid poop and cloth diapering is even easier than when she was a newborn. I am officially back to loving cloth diapers.

Now that Kaylee is bigger the cloth is slimmer on her so I love the way she looks with her fluffy butt. With summer just about here I feel less guilty about letting her run around outside without clothes on because her diapers are a fashion statement by themselves. The biggest challenge I am currently having with my cloth toddler (besides the typical toddler who refuses to lay still during a change) is that she has figured out how to remove the velcro diapers and the kid is a nudist at heart so we are sticking to snaps. Overall, I have absolutely no regrets about my decision to cloth diaper and would recommend it to anyone even considering cloth. 

Monday, May 27, 2013

Homemade Wipe Solution

Before I became a mother I had all these ideas about what type of mother I wanted to be. If you have read my blog you know I am a little crunchy and don't buy conventional beauty products. I don't buy conventional baby products either. So in addition to cloth diapering I decided to make my own wipes. There are lots of tutorials out there on making your own wipes which I followed in the early days. Once I got into full time cloth diapering I realized cloth wipes were easier than making your own disposable wipes. Everything goes in the wash rather than throwing wipes in the garbage and diapers in the laundry. One experience of a homemade disposable wipe in the washer with the diapers (what a mess!) made me forever switch to cloth wipes.

The thing I love about cloth wipes is that the wipe solution I use is extremely versatile. I use it to wipe a dirty bottom, clean dirty hands, and can even use it as a face wash for myself. It is super easy and super cheap. In honor of reduce, reuse, recycle I used my peri bottle from the hospital to hold my wipe solution. It is the perfect size and since it is a squeeze top I can close it so little hands don't spray solution everywhere and I can control how fast the solution comes out onto the wipe.

Here is my wipe solution (I never measure and have never had a "bad" batch of wipe solution)


  1. Clean and rinse peri bottle
  2. Put a small glob of coconut oil* in bottle (other oils can be used as well. I originally used Mother Love Apricot Birthing Oil because I had it on hand and it worked just as well)
  3. Put a small squirt of California Baby Body Wash (or other baby soap) in bottle
  4. Fill with warm water
  5. Shake
How simple is that! I have never once purchased baby wipes from the store which saves money and I like knowing my baby's bottom is preservative free!

*I should note that coconut oil is solid in cooler weather. I found that if I vigorously shake the bottle before spraying the oil breaks up into little clumps and would come out with the water onto the wipe in small amounts which worked just fine. Now that it is warmer I never have this issue as the oil is in liquid form. If you live in colder climates and the clumps bother you I would suggest a different oil.

Thursday, May 23, 2013

Missing Meds

It seems that every few months something happens that prevents me from getting my meds. Sometimes I will admit it is partially (or fully) my fault. Like the time I needed HTS, but the pharmacy ran out. I probably should have put in the order before I was really low of HTS vials. Other times I really had no control over the issue like when my insurance suddenly said I was never insured by them despite having the same insurance for almost 10 years!

Well, it has happened again. I started to realize I was running low on my HTS and Albuterol so I called in my meds. I get my meds form an online pharmacy so I have to wait for them to be delivered. The lady said it would be shipped "one day delivery" so I assumed it would arrive the next day. This is new as it has always been a few days and you could get overnight for an extra fee. So when the package didn't arrive the next day I just assumed (that was my first problem right there!) it would arrive the nextfollowing day since I did not pay the extra fee. The next day it didn't arrive and I started to worry. The problem is that the pharmacy is on Eastern time which is a three hour time difference so their office closes at 3 (my time) and mail doesn't arrive until 6 my time. By the time I realized the package did not arrive my pharmacy had been closed for over three hours.

I called the pharmacy first thing this morning. Apparently, my Advair can not be filled until next week so they did not send any of my meds. They were waiting to send them all together. I have about 3 extra Advair left over from pregnancy that I did not need to use, but have no extra Albuterol and HTS. I wish they would have told me because I really did not even need to fill Advair. So my meds are arriving tomorrow (except Advair) which means tonight I will not have any Albuterol or HTS. Sigh. Yes, it was partially my fault. I should have called yesterday so they would have straightened everything out and I would have gotten the shipment today. I should not have assumed the package would arrive. I should have learned my lesson by now. Apparently I am a slow learner.

Monday, May 20, 2013

I Shocked Myself!

Why you ask? Because today I went jogging!! Yes, Inhaling Hope, who does not run no matter the circumstances went jogging! I laced up my shoes, put Kay in the jogging stroller and instead of our usually leisurely walk I decided to jog (relatively slowly) instead.

Now I know many of you (especially you marathon cysters and fibros) are shrugging your shoulders, what's the big deal? The deal is that I am a swimmer. I love the pool, I love doing laps, I love the cool smooth feel of the water. I am not a jogger, I hate to jog, I hate sneakers, and I hate the feel of hot hard concrete. BUT I can't swim everyday and I am having this intense need to be healthier, stronger, more fit. I am watching my daughter grow older and more active and I want to keep up with her. So today, and from now on, I am a jogger.

I told Kay as we started walking on the greenbelt that I was attempting to jog and that I could not guarantee success. Lucky for me she was too busy saying, "dog dog woof woof!" to really care about my plans. I told myself when I turned the first corner I would start to jog. I put my stroller jogging strap on (which is a joke because I was running .00004 miles per hour and it isn't like the stroller would wildly lose control if I fell to my death, but safety first I guess!) and off I went. For the first 3 seconds I felt good. In fact I think I liked it for the first 7 seconds. About 30 seconds in I remembered why I hate jogging, but I pushed that annoying voice to the back of my head and kept at it. At 1 minute in I remembered I only have 50% lung function and started to breath heavy (is that normal so soon??). At 2 minutes in I was already in this sucks mode. But the good thing about jogging on a greenbelt is there are other people to impress. Not that any of those dog walkers, bikers, or senior citizens cared about my slow motion jogging, but in my mind they would be thinking I was a super out of shape loser if I stopped jogging so I kept at it. I jogged for what seemed like 3 miles, but I think it was only about 1/4 mile.

My goal for the rest of the summer is to swim 3-4 days a week and jog 3 days a week. I feel so motivated to kick CF's butt!! I will keep you updated on my progress.

Saturday, May 18, 2013

No Cayston??

I am allergic to every inhaled antibiotic except Cayston so it has truly become a lifeline for me. My health improved dramatically after starting it and I was able to go three years without a PICC which is a good think because I am allergic to everything involved in PICC lines. I also got through a healthy pregnancy thanks to Cayston. The past several months have been tough on my health and I was relieved in the beginning of May when I knew I would be starting Cayston since I always feel a lot better during my "on" months.

Two weeks into my Cayston month I went to do my morning treatment and as usual pushed the on button without paying much attention. As I was sitting their doing my treatment I realized that nothing was coming out of my neb. I looked down and say my machine was off so I pushed the on button again. The light turned green and the welcome screen appeared only to instantly turn off. I figured it wasn't plugged in all the way so I double checked. It was plugged in perfectly. I tried again. Nothing. I moved outlets. Nothing. I tried using batteries. Nothing. I started to panic internally for a second. I didn't want to stop mid-month and I really needed these antibiotic as I have been feeling tighter in my lungs lately and want to stay on top of my lung health. 

I called Altera expecting to answer a million questions or troubleshoot. To my shock they looked up my machine which is registered under my name and said they would overnight a new one. Sure enough the very next morning I had a brand new Altera on my porch. I did miss 3 doses and noticed the difference since I coughed a lot throughout the night after my missed treatments, but I have to admit I was pretty impressed that within 12 hours I had a new machine. So I am back on the Cayston train and just hoping my tightness dies down before the end of the month.

Wednesday, May 15, 2013

CF Awareness Month Blog- CF & Kids



Kaylee is only starting to talk and has a limited vocabulary, BUT she makes it clear that CF is already a big part of her life. I have 3 cute stories to share about CF and Kaylee.

  1. Whenever she sees my Albuterol puffer she holds it up to my mouth and then blows. I don't think she knows that I actually breath IN rather than blow out. It really is beyond cute, but kinda sad that she already knows what a puffer is.
  2. She thinks my nebs are the coolest thing around. Whenever I do treatments she wants to pull the neb from my mouth and suck on it too. I gave her a neb that only she can use and whenever she wants my neb I tell her to go get hers. She keeps it with all her toys and will walk over grab it and chew, suck, or make noises into her neb while I do my treatments. It is pretty darn cute. After having a past that CF was something we didn't talk about I am trying to normalize it and make sure I am open and available to Kaylee if she ever has questions about my treatments or CF.
  3. She performed CPT on me which I talk about here!


Sunday, May 12, 2013

11 Months

Dear Kaylee Marie,
You are 11 months old today! Only one more little month and you will be a whole year! I know it is probably because I am your mom (and I am sure all moms think this way), but I think you are the smartest baby on this entire plant! You have grown and changed so much I feel I need to write a novel, but I will try to just mention the highlights.

You have mastered WALKING, little one. What a big accomplishment and you absolutely love walking.You also try running sometimes. You have this game you play with Papi that he hides behind the corner and you walk down the hall. When you get close to him he jumps out and chases you. You turn around and run until you fall and crawl away, laughing the entire time. The only thing you love more than walking is dancing and baby girl, you have some amazing moves! You dance while sitting, standing, or squatting. you never miss any opportunity to dance!

You also love to let mommy have a turn. When I read you a book you have that has textured pages you like to hold my pointer finger in your hand and make me touch the texture so I can feel it too. When you eat or drink anything you like to hold it out so I can taste it. You like to turn off the light and sometimes you reach for my finger and make me turn off the light. You love to include me and I love that about you!

You are an amazing communicator and not just with words (more on that later). The other day you had your first big fall while walking. You were walking out of your room when you fell and bumped your head on the door frame. You cried, I snuggled you and all was well again. You then looked at me, walked to the door, pointed to it, squatted down and in slow motion gently bumped your head against the same spot you bumped it before. You then looked right at me and pointed to the door frame again as if to say, "that is what happened!"

Things You Like: Blowing on dandelions. In fact you love it so much that sometimes you try to blow other random flowers hoping the petals will blow away like the dandelion seeds. You love the palm trees in our front yard, seriously you just love them! You love airplanes and get excited and point to the sky whenever one goes by. You also love opening and closing your hand. You do this when saying, "bye bye", but you also like to do it when I sing a little song about opening and closing our hands.

Things You Dislike: You are a pretty easy going kid, but you absolutely are hitting that, "I do it" stage. You want to do everything yourself and get frustrated when you can't. You like to hold your own glass to drink water and you are pretty good at it, but then you want mommy's glass and if I say, "no" you get pretty upset at me because you want to do everything I do.

New Words: Oh, how you love to talk and you seem to learn words so quickly. Here are your newest words: no no (you make your mouth really tiny for this and you wag your little finger), do do (with a hard O) for pato (duck in Spanish), do do (with a soft O) for dog. You also know what sound a dog makes, "woof woof". You can say 11 words and you are only 11 months old! See, I may just be on to something with this smartest baby ever thing...

Saturday, May 11, 2013

So It Has Begun

I am taking a tiny break from 31 Days of May The CF Way to mention my very favorite time of spring. It is the time of the year when the days are long and hot. When the irritation of allergies has faded. The hard work of planting your garden is done...


And you reap the benefits!! I put in my garden April 3rd (my birthday) and it is just now exploding with life!


Kaylee and I garden every morning and the first thing she does is look to see if there are ripe strawberries on our twelve (yes, twelve) strawberry plants. She gets beyond excited if she sees one. She starts squealing  "Num num" (her way of saying she wants something yummy) until I pick it for her. Needless to say my husband and I have not gotten even one strawberry yet...the girl loves them!

It got hot fast this year so I think this will be the last of our beans until fall...

 But my favorite summer vegetable (technically a fruit) is just starting to produce fruit! This tomato plant along with one other has already grown out of its cage. We have three regular and one cherry tomato plant.

One of Kaylee's favorite- squash just starting to grow!


This year we have:

  • 45 onions
  • 12 strawberry plants
  • 12 snap pea vines (that will be dying off shortly)
  • 2 cucumber plants
  • 4 tomato
  • 1 zucchini
  • 1 squash
  • 6 jalapeno
  • 1 habanero
  • 2 different varieties of basil
  • Lemon Balm
  • Mint
  • Lavender
I am excited to see how well we do this year since our crop last year was just okay. I think giving birth in the middle of summer, never weeding after baby came, and then forgetting to water for waaaay too long didn't help our crop last year. I am so excited to feed my family organic home grown food this year!

Friday, May 10, 2013

CF Awareness Month Blog - Pros and Cons




The pros and cons of CF. Well, the list of cons is so long I could write a book. Also, I think the cons of having a progressive fatal disease that requires hours upon hours of breathing treatments and medications to stay well are kinda obvious. The pros on the other hard are a little harder to find.

I think the biggest pro for me personally is that CF has opened my eyes to living a healthy lifestyle. Because so much of my life is ruled by meds, treatments, and pills I have looked closely at my day to day life and how I can keep it as pure and natural as possible. This includes the food I eat, the products I use to clean my house, the products I put on my skin, what I put on my daughter's skin, and how I wash my clothes. I want to expose my body to as few toxins as possible and have tried my best (and continually trying to improve) to make our living environment as clean (not in the bleached to death sense of the word) and as healthy as possible. Despite having CF I feel I have a very healthy lifestyle that is full of fresh, healthy food from the earth, a home environment free from harsh chemicals and toxins (or as free as possible considering the society we live in), and full of fresh air and exercise. I am not sure I would care as much about these things if I did not have CF because I am not sure how much I would even think about my health. I also love knowing that my daughter is growing up in this environment and in this life style as I know it will benefit her.

Thursday, May 9, 2013

CF Awareness Month Blog - Milestones & Challenges




**Of course my healthy pregnancy/delivery are my biggest accomplishments, but considering my whole blog is about pregnancy/motherhood I thought I would write about a different CF accomplishment.**

When my husband and I moved in together (before we were married) I knew we would want children in the near future. I was 25 and knew that I wanted to start my family around 30 or before. I also knew I needed my health to be in the best place possible. My lung function was sitting around 48% and my doctor wanted my lung function to be at least 50% before getting pregnant. I bought a huge table calendar and put it on my desk in my room. I charted everything. I charted the color and viscosity of my sputum, how I felt, if I was having an asthmatic day, allergies, hunger level, and when I thought I was ovulating. I also recorded everything I was doing for CF: Vest, Albuterol, Pulmozyme, Cayston, Flutter, swimming, yoga, walking, etc. I wanted to be held accountable for my health and I also wanted to know exactly when my allergies hit (rather than "in the spring") and I wanted to see patterns in my health so I could plan my pregnancy accordingly. I also wanted to know when I ovulated so I could start keeping track of my cycles.

I put every ounce of energy I had into getting as healthy as possible. I wanted to be mentally, emotionally, and physically ready for a child. I felt like my life consisted of working, treatments, and exercise. By the time I was ready to conceive my lung function was at an all time high of 58%!! This was higher than I had ever anticipated my lung function to be. I still remember blowing my 58% and was floored. I never thought I would ever see those numbers again. I would say gaining back 10% lung function was my biggest CF accomplishment to date. Just about 11 months after giving birth I am working on getting back to 58%, but living for treatments and exercise is no longer possible. I am still trying to get exercise 5 days a week and never miss a treatment, but caring for CF is drastically different after becoming a mommy. I am hoping in this next year I can see those numbers again.


Wednesday, May 8, 2013

CF Awareness Month Blog - Non Compliance


Unfortunately, like many cysters and fibros I went through a period on noncompliance. After I was diagnosed I was required to do the Flutter once a day. I also had to take enzymes. I often fought with my parents about the Flutter because I never felt sick (heck I lived 14 years without ANY treatment so what was one missed treatment going to do?) By high school I was really good about doing my Flutter because I hated coughing in front of my peers, but during this time my doctor decided to add more to my daily routine. I got the Vest around this time and was supposed to start Tobi and Pulmozyme. I fought my nebs a lot. I hated the thought of this disease taking over my free time. 

My first year of college was the worst. I was living in the dorms and there was always something going on. No matter what time of day or night there were always things to do, people to see, places to go.  I would often find myself rolling into bed in the early morning hours when it was much too late to do treatments. I was tired and I would tell myself I would double up Vest time the next day, but somehow that extra Vest time never seemed to happen. Over the next few years I learned how to do enough of my treatments to keep myself from getting too sick and having to go to the doctor, but not enough to actually be a good compliant cyster. I think the fact I was so active (I was on the water polo team, took dance classes, and went to the gym) was the reason I got through those years without doing much as far as treatments.

Around the time I met my husband I realized that I did want a family, a future, kids. I decided I needed to step up my treatment regiment. I started doing all my treatments (although it was discovered in college I was allergic to Tobi so I only had to do Albuterol, Pulmozyme, Vest and my Flutter). I wish I had started being compliant so much earlier. I wish in junior high I could have realized 30 minutes twice a day was worth my health and well being. I wish I would have taken the time on college to shut my dorm door and taken care of myself. I can't change the past, but I can choose how to live now and in the future. My health is on the top of my priority list and it will be there for the rest of my life.

Tuesday, May 7, 2013

CF Awareness Month Blog - Home Life





I am not in school anymore and since I had a late diagnosis I never had to deal with CF and elementary school. During junior high and high school I was really healthy and CF did not play a role in school at all for me. We never told any of my schools that I needed enzymes and I just carried them in my pocket (naughty naughty!) so CF really wasn't part of my school life at all. I decided to alter this topic (Can I do that?!?) and do a day in the life of a CF mom since CF plays a big role in my life as a mommy.
The schedule of a CF mommy to an almost 11 month old:

6:00am
  • Wake up to a squeezable little face inches from mine cheerfully chanting, "hi!" until I open my eyes. 
  • I often lay around in bed for 20 minutes while Kaylee crawls all over me (I hate waking up).
  • Get Kaylee and myself dressed and ready for the day. 
  • I do Albuterol because I just feel so much better when my lungs are open. Kaylee plays on the floor in the living room with me while I neb.
7:00am
  • Make breakfast for both of us and we sit together to eat. Kaylee takes forever to eat (we do Baby Led Weaning) so I often sit and chit chat with her while she finishes.
  • Clean up breakfast
  • We go back to the living room where I do the rest of my treatments (Vest, HTS, Cayston) while she plays.
8:30am
  • Sterilize nebs
  • Play time with Kaylee- usually we listen to music (she knows how to turn on the cd player and she is pretty obsessed with dancing), puzzles, blocks, or she practices walking.
9:00am
  • I use my juicer around this time and Kaylee "helps" me get the veggies out of the fridge. (In other words I open the fridge and she pulls all the condiments out of the door and scatters them all over the floor. It's actually easier to clean and prep while she plays with the bottle of mustard so I don't mind).
  • I let Kaylee take some sips of juice (her favorite is kale, spinach, carrot, apple juice) and then I drink the rest and clean up.
9:30am
  • Kaylee and I play in the garden. I weed, water, and tend to my plants while she stomps around in the mud, pinching dry clumps of soil with her fingers (she LOVES this), pulling leaves off my precious veggie plants (eek!), and running her fingers through the soil. We both love spending time in the garden and I think she would spend all day out there is she could.
10:30am
  • Around this time Kaylee goes down for a nap. Depending on how I am feeling I nap too or I do housework (laundry, hanging clothes on the line, washing floors, the usual). I also do my next set of treatments- Albuterol, Pulmozyme, Cayston. If I am lucky I have 30 minutes or so of down time which is usually when I blog.
1:00pm
  • Lunch time for both of us.
1:40pm
  • After lunch is a little less structured. We either have go to a playgroup get together, go to music time at the library, play in the blow up pool, take a walk, run errands, etc
4:30pm 
  • I start making dinner.
  • We all eat together (unless my hubby is at work)
  • Clean up dinner
6:00pm
  • I start treatments- Albuterol and HTS (if my hubby is home he hangs out with K while I do treatments, once a week my dad comes to hang out with her or she plays on the floor near me.
  • Quiet play in Kaylee's room.
7:00pm
  • Start bedtime routine for Kaylee
  • Put Kaylee to bed
7:45pm
  • Finish treatments 
  • Relax and go to bed!
*Of course this is approximate cause anyone who has ever been around a baby knows they aren't that great at time management!
**I also swim several times a week so those days look slightly different too.

Sunday, May 5, 2013

CF Awareness Month Blog- Diet




Diet. This is an interesting and often confusing part of CF. We need calories and lots and lots of them. What is the easiest way to get lots of calories? Junk food- ice cream, candy, chips. The problem is that as a CF we desperately need a diet that is rich in nutrients, vitamins, antioxidants- none of which can be found in junk food. So the dilemma is finding healthy food that will provide enough calories to sustain our bodies that need so very much.

As someone who struggles with weight gain and the idea of eating foods that are highly processed I am constantly working on finding a balance. I got my degree in nutrition in 2006 (eek, that ages me!) and have been careful to eat from the earth rather than a package since then (although we ate really healthy growing up too). Luckily, my husband and daughter are both great eaters and so we all eat a lot of fruits, vegetables, whole grains, nuts, and seeds. I try to incorporate healthy high fat foods as often as possible such as avocado and nuts, but I don't obsess about getting enough fat/calories since I think the secret to a good healthy diet is enjoying food. If I feel like a salad, I eat a salad. If I feel like eating an apple void of peanut butter or cheese (my dietitian always says to slather with cheese, peanut butter, or butter) I do it.

I currently (and have during different times in the past) am having trouble maintaining weight with my diet alone so I drink Ensure Plus to provide the extra calories I need. I think being sick for a few months and nursing an 11 month old both contributed to my need of an obscene amount of calories. I just can't possibly eat enough calories in the day and enjoy healthy foods without a supplement at this point in my life.

Okay, before you role your eyes at my ultra healthy diet I will be the first to admit that I am not perfect. Of course I eat crap out of a package sometimes. But my day to day life I try to eat as healthy as possible since I really believe that although highly processed foods may give us the fat content we need, it will ultimately negatively effect our bodies in a way that will not be conducive to health which is the whole point we try to gain weight anyway..

I also just started juicing which I have fallen in love with!


Saturday, May 4, 2013

CF Awareness Month Blog- Illness and Admissions




I can't really remember my first PICC line too well. I think I got my first PICC a few years after I was diagnosed. I remember being completely terrified of the whole process. The nurses were getting everything set up and suddenly I started crying because I was so afraid of what was about to happen. One of the PICC nurses looked up really surprised. She asked me how many PICCs I had in the past and when I told her that this was my first she was really shocked. She assumed that having CF that I was used to the process. She was really sweet to me, but unfortunately she had a lot of trouble getting a PICC in. I started crying again by the third attempt. She felt so bad she made a nurse pop me some popcorn so I could have a treat when it was all done. I remember being afraid, but mostly I remember how kind the nurses were and how well they took care of me despite my uncooperative veins.

Back at home I waited for the home nurse. Again, I was terrified. I had no idea what to expect. When the home nurse arrived she first went to change my PICC dressing (this was before I became allergic to all things with adhesive). I refused to look at my insertion site and I remember feeling woozy after she removed the dressing. The whole idea of a tube coming out of my arm made me feel ill. At the time I would close my eyes when I got my blood drawn so a PICC was something I thought I would never be able to look at. (Now I like watching my blood draws and have absolutely no problem looking at my insertion site). When the nurse came in with my meds I saw lots and lots of large syringes with HUGE needles. I internally panicked because I assumed I would be giving myself injections with those larger than life needles. Turns out, the needles were used for mixing the antibiotics and did not need to pierce my skin.

The last thing I remember was feeling pretty depressed during those 3 weeks. I didn't understand how I went from being normal (I had a late diagnosis) to being hooked up to IV meds. I felt as if I went from being healthy to very very ill overnight (why else would you need IV antibiotics unless you were extremely ill? or so I thought at the time). I started to feel the weight of this still new disease and I had to come to terms with my new life.

Friday, May 3, 2013

CF Awareness Month Blog- Medications



Here is my daily CF schedule:

Morning:
  • Albuterol (neb)
  • Hypertonic Saline 7% (neb)
  • Pulmozyme (neb)
  • Cayston (neb every other month)
  • Advair
  • ADEK
  • Singulair
Afternoon
  • Albuterol (neb)
  • Cayston (neb every other month)
Evening
  • Albuterol (neb)
  • Hypertonic Saline 7% (neb)
  • Cayston (neb every other month)
  • Advair
*Swim 4 days/week, Vest everyday, 5 Zenpep with meals

Luckily, I have insurance and it covers most of my medication costs. Without insurance I absolutely would not be able to survive as I would never be able to afford my medications. 

Thursday, May 2, 2013

CF Awareness Month Blog- The First Year- The Worst Year


The first year after diagnosis was a confusing time in my life. I went from being a perfectly normal healthy person with a cough (or so I thought) to having a chronic, progressive illness. I went from being exactly like my peers and siblings to needing to do physio once a day and take enzymes (Oh, how I miss those days. I had no idea how easy my CF was to take care of at the time). I went from seeing the doctor once a year to going every 3 months for hours upon hours. I now had a dietitian, a respiratory therapist, a social worker all in addition my pediatrician and CF doctor. It was all a little overwhelming!

I had a lot of trouble doing my treatments. First, I could not stand the sight of my own mucus. I needed to use the Flutter every morning before school which was great in that I didn't cough all through first period anymore, but I hated looking at the thick mucus I coughed out of my lungs. In fact, I did my treatments in the bathroom with the lights off so I wouldn't have to look at the foul slime coming from my body. (It is funny to me now since I never think twice about my mucus and look at it closely to determine my current lung health).  I also had a hard time feeling like I really NEEDED to do them. My logic was that I lived 14 years without doing a single treatment I wouldn't die because I skipped one night. At the time I knew CF was progressive  but was blissfully unaware that it was fatal so I did not totally understand the importance of treatments.

The positives of that first year were that I coughed significantly less and I finally started growing. I had a nice growth spurt soon after starting enzymes. I was also happy to finally know why I coughed so much. I always knew something had to be wrong because nobody else I knew had a chronic cough so it was a relief to realize that we finally knew what exactly was causing my cough.

Wednesday, May 1, 2013

CF Awareness Month Blog- Diagnosis




I have an unusual diagnosis story in that I was diagnosed as a teenager. I always had a mysterious cough that often came at night. Nothing would stop this cough and despite seeing numerous doctors nobody could figure out exactly what was wrong. There were lots of "educated" guesses such as allergies or asthma, but nothing made my cough go away.

When I was in 7th grade my family moved across the country. When I started going to school in my new town I had to ride my bike because our small town didn't have a bus system. I had no problem biking, but once I got to first period I would start coughing. In fact, I would cough throughout the entire period to the point that I often couldn't pay attention. By second period my cough would disappear and I would be back to normal. I could not for the life of me figure out what was going on. I had physical education 4th period and was relatively athletic. I was a pretty good runner (at the time, I can barely run 5 feet now!) and made good times when running the mile, but once I finished running my cough would come back. I would continue to cough for the rest of the hour. I remember looking around me after finishing a particularly fast mile and wondering why everyone was huffing and puffing, but I was coughing like crazy!

I went to a new pediatrician who was familiar with CF. Looking at my lack of growth and hearing about this mysterious persistent cough the doctor ordered a sweat test. My mom objected at first since I was tested for CF at birth and came it came back negative. She agreed that we would do it again just to be safe. After a sweat test confirmed I had CF a blood test confirmed I had the most common CF mutation DF508. This is where my CF journey started.